When my son Alexander was first diagnosed with Type 1 diabetes we were too busy attempting to figure out how to live with the disease to jump into volunteering or raising money for a cure, even though finding a cure is our deepest wish

Our level of participation in fundraising events varies from year to year depending upon where we are emotionally. One year our son was a local JDRF ambassador for the Walk. He was thrilled to hear himself on the radio and excited to speak to a large group of adults about the struggle of living with type 1 as a child in elementary school. In my book, Parenting Joyfully When Your Child Has Diabetes, I encourage families to find a level of participation that works for them and not to be intimidated or feel pressure to take a role that doesn’t suit them.

A few days ago I volunteered to register cyclist participating in the JDRF Revolution Ride. As always, I was conscious of the great gift that volunteering was to me. I volunteered alongside a grandmother whose granddaughter has type 1 diabetes. We were able to commiserate about how challenging it is to live with type 1 diabetes and I was able to share some resources for her daughter. A man cycled by and stopped when he saw our registration sign. He pulled up his sleeve and showed us the latest European technology that he’s using to manage his type 1.

I came away, as I always do when volunteering for a diabetes-related event, with a deep comfort after being among people who understand my family’s life and its challenges. Finding your diabetes tribe is everything.

I may not always have the financial means to donate, or the resources to raise money, but I can show my support by helping behind the scenes or working the event. It’s about much more than raising money. There were participants at the cycling event that had not raised any money but chose to ride to help raise awareness and show their solidarity for people living with type 1diabetes. How awesome is that?

Are you an active participant in your diabetes community and is so, what does that look like to you? I’d love to hear what works for you.

The other night at bedtime I asked my teen what his blood glucose (BG) number was. Five point five,” he yelled back from his bedroom.

“Perfect,” said my husband, reaching over to turn his light off.

“Not quite,” I said. My response was almost automatic. A 5.5 reading is in fact considered perfect blood sugar – there’s even a Facebook group where people post their 5.5 readings. But for me, that’s a perfect blood sugar during the day, a bit too close to the edge of hypoglycemia for me to bid my son goodnight. I sent my son for a small yogurt to top up his blood sugar. My concern about a fatal nighttime hypoglycemia is never far from my mind.

The incident was a reminder that each of us has a different magic number, a blood glucose reading at which we are most comfortable. My husband is more of a risk taker, as he is in many of his parenting decisions. Usually I am the more cautious of the two.

Neither of us is more right than the other. However, this difference in approach can be a spot for friction between parents. This is another area where communicating about diabetes and our feelings is key to avoiding escalating tension. If this is an issue in your home, take the opportunity and step back to assess what is behind your magic number. Is fear driving your choices? If so, is your fear reasonable? Ask yourself if your magic BG number before bed or before, say leaving the house, is negatively impacting your child’s overall health.

Dr. Michael Vallis, is a psychologist who helps adults manage the stress and emotion of living with diabetes. Sometimes when he probes what is behind a higher than desired A1C, it’s the person’s comfort level with a certain BG number. In one case the patient’s magic number was 14 before he would leave his house without fear of hypoglycemia. Dr. Vallis used behavior modification to slowly adjust the patient’s comfort level about leaving home with a lower blood glucose. Before Dr. Vallis could address this issue, the patient needed to share his fear and admit that it was impacting his behaviour around his diabetes care.

As parents we need to assess how fear or other emotions could be impacting how we respond to diabetes. The same is true fears for our partner and our child.

In my book, Parenting Joyfully When Your Child Has Diabetes, you will find tips and testimonials to encourage you to care for your child, yourself and your family. My book offers advice on how to cope with diabetes over the long term and we all know this is a lifelong disease.

When my son Alexander was in grade four we moved to Calgary from New Brunswick where we had been well supported with his diabetes in school. Uncertainty about support in a Calgary school added to the stress of moving across the country. But we lucked out because that neighborhood school had a clear protocol. We naively assumed that quality of care would continue within the Calgary schools. That was not our experience.

Grade five meant switching schools and we were shocked at how different this school was in its approach. Throughout our initial meeting we were repeatedly told, “We are not medical people.” Yet we were not asking for medical assistance. Every request was met with a no. Could we store an insulin pen in the fridge in case our son’s blood sugar went high? No. Could we store juice boxes in the gym in a special box? No. Would the supervisor on the playground have any juice or treatments in their emergency pack to help my son if he had a low blood sugar? No.

Perhaps we should have looked for another school, which some Alberta parents of students with type 1 have been forced to do. But we wanted our son to go to school with his friends and attend the same school as his older sister. Every child in Alberta deserves this choice. The general lack of support meant that I did not feel comfortable being any farther away than 20-30 minutes from Alexander’s school. Going back to work didn’t feel like an option, a financial hardship in an expensive city. Many parents of students with type 1diabetes must make similar decisions about work if they do not believe their child is safe at school.

One of the highlights in elementary school was the week-long, outdoor school where students sleep in teepees and learn about nature in the outdoors. How could our student with type 1diabetes attend and stay safe? The school offered one option and one option only. A parent could accompany him to camp. That parent needed to be my husband because I would not be able to access the teepee with sleeping adolescent boys in the middle of the night to check blood sugars. If I attended, my son would have to sleep in another building with me. That doesn’t constitute fully participating in the experience.

Excluding children with type 1diabetes from field trips if a parent cannot attend is hardly nurturing that sense of belonging promised in the Alberta School Act.

Students with diabetes have the right to the same opportunities as other students and that access must be available no matter where you live in Alberta, no matter what grade you are in, no matter which school you attend and no matter your family situation.

For many parents the start of the school year is a welcome return to routine. But for one group, parents of the approximately 3,800 Alberta students with type 1diabetes, the return to school increases anxiety about the safety of their child at school. The level of parental worry reflects the level of support provided. Unfortunately, that support varies wildly from school to school within Alberta. We need a reasonable, sustainable policy for all students with type 1diabetes.

According to the Alberta School Act, students are entitled to welcoming, caring, respectful and safe learning environme
nts that respect diversity and nurture a sense of belonging and a positive sense of self. Yet it has been my personal experience that some schools fail to fully support students with type 1diabetes, perhaps over a concern about liability or increased costs. A reasonable policy, developed with the education system will ensure that students with type 1diabetes are safe and included in
school with minimal impact on the education budget and without increasing the workload on teachers.

I know this, because other provinces have done so. Nova Scotia, New Brunswick, Newfoundland, Labrador, Quebec (en français) and British Columbia all have policies supporting students with type 1 diabetes. My son Alexander was diagnosed at age seven when we were living in New Brunswick, a province often highlighted for its diabetes school policy. My son was placed in a class with a teacher’s aide who supported another child with learning issues. With minimal training the aide assisted Alexander with blood sugar checks and called me if things were out of the norm. Knowing he was safe at school allowed me to work part time.Students with type 1diabetes may require assistance in addition to emergency situations. Maintaining appropriate blood sugar levels is key to long-term health and academic success. Blood sugar levels that are out of the normal range can impact a student’s ability to learn or their performance on tests. Yet, there is no policy to help my son, or any student in Alberta if blood sugars are not cooperating on exam day.

Type 1diabetes is a complex disease and certainly in the beginning there is a lot of fear and uncertainty as the family and child figure it out. Every family will have different intellectual, emotional and financial capabilities that impact their ability to cope with type 1diabetes. Yet they all deserve to be supported in school.

Students with diabetes have the right to the same opportunities as other students and that access must be available no matter where you live in Alberta, no matter what grade you are in, no matter which school you attend and no matter your family situation.

It’s time for students to return to school and it’s time for the Alberta
government to develop a policy for students with type 1diabetes.